I just finished watching, “Life According to Sam.” This documentary follows a young man living with progeria, and his family. Both of his parents are physicians, and his mother has made it her life’s calling to find a cure for the disease, which causes rapid aging in children. Despite the horrific nature of progeria, there is more beauty in this film than I can convey here.
I am so inspired by their journey as a family.
What does progeria have to do with bipolar? There is, of course, no direct scientific correlation but we can learn a great deal from Sam, and his remarkable parents. They are people who engage fully with the world, and each other, despite a dire diagnosis being in play. We should all take a note and consider our presence as we navigate our lives.
Progeria, and bipolar, both present the potential for a shortened lifespan although through very different mechanisms of action. Also, both groups of people need heroes, who tirelessly research treatments, or dare to say the word “cure”.
It is well documented that anti-psychotic medication can knock one, even two, decades (or more) off of your life. See this article: “Science Isn’t Golden”.
This is causing me to ponder the quality vs. quantity question. What are my goals with this life? Is it time? Is it joy? Is it stability? Hopefully, it is a careful mix of all these ingredients.
I believe strongly in the notion that my children, and husband, need me to be at my absolute best. They need that today, here, and now. So, while I contemplate this issue from that regard, I am quite satisfied to accept the risks at hand, and swallow my small blue pill each and every morning.
I feel great, and I am what they need, right now. That means everything to me.
I am of course pondering the question, “Is there a better way?” Surely my kids will need me to help with my potential grandchildren, and my husband and I have dreams of travel and disco-ball parties in our senior years. What will life be like for them if I’m not there?
I am not scared by my own mortality. I am scared of leaving them in any pain, or with a longing for my support, and company.
Sam’s life was full of quality, and he was simply dealt a raw hand when it came to quantity. I was moved with sadness to learn that he died four days ago. His own mother added years to his short life, through her tireless efforts as a researcher and clinician. A mother’s love can move mountains after all and surely we don’t need science to confirm that.
It begs the question, who are our research heroes in the bipolar community? I simply don’t know the answer to this, although there may be many out there, with less public stories of their work. Can anyone enlighten me?
Choosing treatment options is such a balancing act, with so many diseases. Chemo will take you to the brink of death (in some cases), but it can also offer a chance for life. My psychiatric medications have brought me peace, and made it more possible for me to be a good parent, partner, and friend. The quality of my existence has improved beyond measure, but is the payoff a shorter time to share it with those I love?
Before I had been stable for a long period of time, I simply yearned for the peace I now revel in. I would have accepted permanent disability if it meant quiet in my mind, and happiness in my soul. But so much has changed between now, and then, and it wasn’t only medication, which caused that transformation. It played an important role, but so did therapy, life choices, rules, education, and self-determination. So where do I stand now on this issue? I guess the truthful answer is, I need to do more research.
I would never make a medication adjustment without careful consideration, over several weeks, and with the guidance of my doctor, and deliberation with my husband. It should be said that withdrawal from these medications can cause a crisis (physical and/or psychological), and it should not be done on a whim, or without proper supervision!
I have more questions in this article than answers. I plan on speaking with my psychiatrist further about my specific drug cocktail and evaluating my tolerance for risk vs. reward more thoroughly. I need more information. Perhaps you are the same.
As I ponder this question, about the quality of my life (which is wonderful at present), versus the perceived number of years I have left to live it (who knows), I’ll leave you with a story…
I wrote a letter to Sam’s parents over email, expressing my gratitude for the film, and my heart-felt condolences. I hit the send button, as one does, and seconds later I heard a noise outside my window. I went outside to see what it was, and much to my surprise it was my son’s missing rabbit, Hopper. He escaped into the wild many days ago, and we presumed he was gone forever. My son has been grieving the loss heavily. I called the rabbit by name, and he ran directly into my arms, unharmed. I have no explanation for this gift, but I’d like to think it was in some way connected to Sam.